Jesy Nelson shared another emotional update about her daughters’ health journey as she opened up about a frightening setback in their treatment. The former Little Mixstar revealed that a serious illness forced her twin girls to miss a crucial window for gene therapy after their spinal muscular atrophy diagnosis.
The singer has been documenting Ocean and Story’s battle with SMA Type 1 while campaigning for wider newborn screening across England. Her latest revelations came in her upcoming Prime Video documentary “Jesy Nelson: Life Changing,” which follows the family through one of the most difficult periods of their lives.
Jesy Nelson said delays in treating spinal muscular atrophy could cause permanent damage
According to The Sun, Jesy explained that her daughters had already been scheduled to receive gene therapy shortly after their diagnosis. However, everything changed when Story became critically ill.
“Not long after we got the diagnosis, they were booked in to have their treatment,” Jesy said. “Then Story got pneumonia and was really struggling to breathe. She started choking so we had to rush her into hospital. It breaks my heart because she’s so vulnerable. That’s when we were told that she can’t have the treatment.”
The publication reported that doctors ultimately decided neither Story nor Ocean was well enough to undergo treatment, despite the increased risk that delays could lead to permanent nerve and muscle damage. Jesy recalled, “That was when she got given her breathing machine. She came home and then Ocean got ill.”
The documentary also captured the emotional toll the experience took on Jesy’s then-partner, Zion Foster. He admitted, “I’m not equipped to deal with this. I’m out of my depth; emotionally, physically and mentally.” The series also covered the couple’s split, which became public earlier this year.
Jesy has since thrown herself into raising awareness about SMA and urging the UK government to expand newborn screening. England announced that screening would begin rolling out from October 2026, but it will initially cover only 72% of the country rather than every newborn.
The latest update came just days after Jesy shared a touching Instagram post about her daughters. She shared a video of herself sitting on a playground swing with one of the twins and wrote, “My dream is to one day push my girls on a swing all by themselves but for now we’ll enjoy it just like this.”
TELL US – WHAT DO YOU THINK OF JESY NELSON CONTINUING TO SHARE HER FAMILY’S SMA JOURNEY TO RAISE AWARENESS?
Originally reported by Vanshika Vasundhare Singh on Mandatory
